Me too - Re: OT Seizure help needed

[Guest guest]

Cpould you help m,e with this, Tracey? We haven't done the first set of

exercises yet as I need to get Henry;s school involved ,as he';s there Monday to

Friday now.

He had another seizure last night, I don't know how to categorise it all. The

jerks (one sided, on the left) went on for 10 minutes, his eyes were deviated to

the right. He was conscious and trying tio communicate with me - the seizure

upset him.

At the moment he's not on any meds and we don't have an emergency protocol, but

of course the school really needs one and I went to the GP today to ask for one.

I really want to avoid AEDs but they seem pretty inevitable. I need some help

from someone really experienced in reducing seizures with biomed: is there

anyone on this list who could help me please? Also I have got nowhere in getting

a proper investigation and work-up and I would welcome sopme support here, too.

His dad doesn't want to try GFCF again, but isn't against the ketogenic diet

because there's hard evidence to support its use.

Margaret

> > >

> > > Hi

> > >

> > > DS is having an increased number of seizures again

> > >

> > > What we dont understand and I was wondering if anyone on this group had

> > experienced is the recent change in length profile of them. DS 7yrs usually

> > has 60-90 sec seizures clonic tonic, but recently has had this long tail so

> > still the main seizure ending after 60-90sec but then a continued 10-20mins

> > of what i could only describe as 1/4 of the seizure with clonic shaking and

> > then a brief gap then again. Breathing is also a little laboured but not

> > like the main seizure. I hope I am making sense.

> > >

> > > Neuros suggest emergency meds after 10mins but I think this will only

> > reduce his breathing further. I hate the seizures but really getting thrown

> > with this new end to the seizure.

> > >

> > > Any thoughts welcome.

> > >

> > > Kate

> > >

> >

> >

> >

>

[Guest guest]

The ketogenic diet is suitable for a very small number of kids.. It is not one Scotson favours - she did explain why.. though I cannot recall.1. Margaret are you keeping a food, drink diary with details of his moods, bowel movements etc?  Tash has always been triggered by foods..or food combinations... Big NO NOs have been eggs, potatoes, corn, wheat, sugars

2. Try to begin a food combining approach with him... complex carbs for breakfast.. oat porridge with non dairy milk and sweetened with stevia powder.. only give breakfast one hour after waking... ( this allows waking breathing pattern to be established so enough blood in brain to prevent seizures in the morning.

3. At lunch give animal proteins with veg, salad, garlic and avoid carbs and potatoes... Acid foods take about 5 hours to digest... so you want them to be fully digested before bed time... otherwise blood is drawn from brain to stomach.

4.Dinner must be eaten at least three hours before bedtime and should be easy to digest foods.. so basmati rice, rice pasta, vegetables or lentils or presoaked mung beans....Avoid sugary drinks.. these throw blood sugar.. and often shifts in blood sugar can cause seizures.

seizures at night often happen with low oxygenation caused by weak breathing as the kids sleep. This weakness is made worse if they kids are over tired or stressed as this impacts on the effectiveness of breathing.

The supps which we made gains on have always been fishoils.. omega three.. we were warned against using omega 6 oils for her though cannot recall why.Lemon Balm tea is supposed to be good to prevent seizures... Tash enjoys this tea and has it simply with boiling water.. it is very calming... she has also done well on Rooibos tea.. I think mainly because this is a liver detoxer.. and her liver was prone to toxins with the AEDs.

She has been sensitive to electrical things.. so we have NO wifi or DECT phones near her.. both will be around his school.. and she has no plugged in electrics in her bedroom at all.

I hope you do find a way to either get Janos to come to you to teach you first stage massages.. or some other way to learn the exercises... It took us 18 months to reach our current seizure free state.. and there were moments of more severe seizures as her body healed.. However it was part of her healing to have these seizures.

It is such a shame that the doctors do not recognise the decreased oxygen levels overnight.. It would make it easier to have supportive oxygen at home.. for use over night.

Best WishesTracey

 

Cpould you help m,e with this, Tracey? We haven't done the first set of exercises yet as I need to get Henry;s school involved ,as he';s there Monday to Friday now.

He had another seizure last night, I don't know how to categorise it all. The jerks (one sided, on the left) went on for 10 minutes, his eyes were deviated to the right. He was conscious and trying tio communicate with me - the seizure upset him.

At the moment he's not on any meds and we don't have an emergency protocol, but of course the school really needs one and I went to the GP today to ask for one.

I really want to avoid AEDs but they seem pretty inevitable. I need some help from someone really experienced in reducing seizures with biomed: is there anyone on this list who could help me please? Also I have got nowhere in getting a proper investigation and work-up and I would welcome sopme support here, too. His dad doesn't want to try GFCF again, but isn't against the ketogenic diet because there's hard evidence to support its use.

Margaret

> > >

> > > Hi

> > >

> > > DS is having an increased number of seizures again

> > >

> > > What we dont understand and I was wondering if anyone on this group had

> > experienced is the recent change in length profile of them. DS 7yrs usually

> > has 60-90 sec seizures clonic tonic, but recently has had this long tail so

> > still the main seizure ending after 60-90sec but then a continued 10-20mins

> > of what i could only describe as 1/4 of the seizure with clonic shaking and

> > then a brief gap then again. Breathing is also a little laboured but not

> > like the main seizure. I hope I am making sense.

> > >

> > > Neuros suggest emergency meds after 10mins but I think this will only

> > reduce his breathing further. I hate the seizures but really getting thrown

> > with this new end to the seizure.

> > >

> > > Any thoughts welcome.

> > >

> > > Kate

> > >

> >

> >

> >

>

[Guest guest]

PS his seizures sound as if they are focal.. just like Tatijana... and these respond least well to AED meds.. however we have had major gains with TST.. Tracey

The ketogenic diet is suitable for a very small number of kids.. It is not one Scotson favours - she did explain why.. though I cannot recall.

1. Margaret are you keeping a food, drink diary with details of his moods, bowel movements etc?  Tash has always been triggered by foods..or food combinations... Big NO NOs have been eggs, potatoes, corn, wheat, sugars

2. Try to begin a food combining approach with him... complex carbs for breakfast.. oat porridge with non dairy milk and sweetened with stevia powder.. only give breakfast one hour after waking... ( this allows waking breathing pattern to be established so enough blood in brain to prevent seizures in the morning.

3. At lunch give animal proteins with veg, salad, garlic and avoid carbs and potatoes... Acid foods take about 5 hours to digest... so you want them to be fully digested before bed time... otherwise blood is drawn from brain to stomach.

4.Dinner must be eaten at least three hours before bedtime and should be easy to digest foods.. so basmati rice, rice pasta, vegetables or lentils or presoaked mung beans....Avoid sugary drinks.. these throw blood sugar.. and often shifts in blood sugar can cause seizures.

seizures at night often happen with low oxygenation caused by weak breathing as the kids sleep. This weakness is made worse if they kids are over tired or stressed as this impacts on the effectiveness of breathing.

The supps which we made gains on have always been fishoils.. omega three.. we were warned against using omega 6 oils for her though cannot recall why.Lemon Balm tea is supposed to be good to prevent seizures... Tash enjoys this tea and has it simply with boiling water.. it is very calming... she has also done well on Rooibos tea.. I think mainly because this is a liver detoxer.. and her liver was prone to toxins with the AEDs.

She has been sensitive to electrical things.. so we have NO wifi or DECT phones near her.. both will be around his school.. and she has no plugged in electrics in her bedroom at all.

I hope you do find a way to either get Janos to come to you to teach you first stage massages.. or some other way to learn the exercises... It took us 18 months to reach our current seizure free state.. and there were moments of more severe seizures as her body healed.. However it was part of her healing to have these seizures.

It is such a shame that the doctors do not recognise the decreased oxygen levels overnight.. It would make it easier to have supportive oxygen at home.. for use over night.

Best WishesTracey

 

Cpould you help m,e with this, Tracey? We haven't done the first set of exercises yet as I need to get Henry;s school involved ,as he';s there Monday to Friday now.

He had another seizure last night, I don't know how to categorise it all. The jerks (one sided, on the left) went on for 10 minutes, his eyes were deviated to the right. He was conscious and trying tio communicate with me - the seizure upset him.

At the moment he's not on any meds and we don't have an emergency protocol, but of course the school really needs one and I went to the GP today to ask for one.

I really want to avoid AEDs but they seem pretty inevitable. I need some help from someone really experienced in reducing seizures with biomed: is there anyone on this list who could help me please? Also I have got nowhere in getting a proper investigation and work-up and I would welcome sopme support here, too. His dad doesn't want to try GFCF again, but isn't against the ketogenic diet because there's hard evidence to support its use.

Margaret

> > >

> > > Hi

> > >

> > > DS is having an increased number of seizures again

> > >

> > > What we dont understand and I was wondering if anyone on this group had

> > experienced is the recent change in length profile of them. DS 7yrs usually

> > has 60-90 sec seizures clonic tonic, but recently has had this long tail so

> > still the main seizure ending after 60-90sec but then a continued 10-20mins

> > of what i could only describe as 1/4 of the seizure with clonic shaking and

> > then a brief gap then again. Breathing is also a little laboured but not

> > like the main seizure. I hope I am making sense.

> > >

> > > Neuros suggest emergency meds after 10mins but I think this will only

> > reduce his breathing further. I hate the seizures but really getting thrown

> > with this new end to the seizure.

> > >

> > > Any thoughts welcome.

> > >

> > > Kate

> > >

> >

> >

> >

>